Hi Michelle

I am so sorry to hear what a nightmare you are having. I don't blame you for wanting to cry - I would too!  It is so unfair that all of you are struggling to get well.  You must be such a strong person - your kids are very lucky.

I can't believe Josh has to make such difficult decisions at his age. That must be very hard.

I'm sorry to hear you need yet more surgery. Sounds like you could do with a break - but with 3 kids that can't be an option.

Does GOSH have any idea why they are responding to more things as they get older? is it mainly food that triggers their flare ups or is it illness too? 

Our eldest son has had a better week thanks to starting the Neocate Advance - his school have noticed a change in his energy levels - so relieved. Our youngest son started the week off okay and ate well last weekend but he has refused to eat again today and has tummy ache and complaining of pain inside his bottom (he does this every now and then and gets very upset - i haven't a clue why as he doesn't like sore?).

Anyway, I hope Josh gets on ok when the change the peg.

Take care,

Kitty